How Pittsburgh is Advancing the Care for the Young
Meet four physicians making breakthroughs in medical care to improve the lives of Pittsburgh’s children and adolescents.
From holistically caring for children with complex orthopedic conditions to taking an unconventional approach to the treatment of severe peanut allergies, from encouraging teenagers to champion for violence prevention to cultivating living donor liver transplants for infants and children, the region’s doctors are advancing how we care for children and adolescents.
dr. elizabeth miller
Chief of Adolescent and Young Adult Medicine
Children’s Hospital of Pittsburgh of UPMC
It was 18 years ago, but Elizabeth Miller vividly remembers when that girl walked into the teen clinic.
She was 15 years old and in need of a pregnancy test. She didn’t want to be pregnant but wasn’t on birth control. When the test proved negative, Dr. Miller went into health education mode, reviewing birth control options. Out of routine, she asked the girl the standard, adult domestic violence question: Do you feel safe in your relationship?
“She looked at me like, ‘Huh?’” Miller says. “I asked if she could talk to her boyfriend about using condoms.”
“Sometimes,” the girl responded.
It’s really important that you talk to him about using condoms every time, Miller urged. “When you’re ready to decide what you want to do about birth control, come back and see me. I’m here every Thursday night.”
Two weeks later, Miller got a call from the emergency room. We think we have one of your patients here. The girl had sustained a severe head injury after being pushed down the stairs by her boyfriend.
“When you ask, ‘What got you super passionate about this subject?’ That was it. It really blew my mind that I had done my dissertation about violence against women, had been pushing within healthcare for more screenings to catch signs of domestic violence, had been training my fellow colleagues on the subject, and it was staring me in the face. And I totally missed it.”
That girl is the reason Miller has spent the past 18 years doing research to understand what’s happening developmentally for adolescents — and what she might have done differently for that girl. Later, Miller would understand that the girl had experienced reproductive coercion, in which male partners actively try to impregnate female partners against their wishes by tampering with birth control. It’s an attempt to ensure these women are forced to remain in the partner’s life forever.
“We think of violence as broken bones, but violence is the inflicting of pain, suffering or injury on another person and it may or may not result in physical injury requiring emergency room treatment,” says Miller.
Stopping violence from happening in the first place has become the priority, which also works to steer the conversation away from questions that point the finger at the victim: Why are you still with him? Why did you drink so much?
It’s a daunting task, she admits, but not insurmountable. She’s found that sexual violence functions as a three-part puzzle — a combination of our inability to talk to adolescents in a real and practical way about sex, cultural norms that chalk aggressive behavior up to “locker room talk” and recognizing that young people who are having sex with people against their consent also tend to be young people who engage in bullying, homophobic teasing and sexual harassment in their elementary and middle school years.
It’s also not a woman issue, she adds; it’s a people issue.
In an effort to get more adult men involved in stopping violence against women and girls, in 2006 she partnered with the national nonprofit Futures Without Violence to create one of her largest research projects, Coaching Boys Into Men. By enlisting the help of high school coaches, the program aims to reach adolescent boys in ways that parents and teachers often cannot. The project has been implemented in several local college campuses, as well as 33 high schools and 41 middle schools in southwest Pennsylvania.
For 10 minutes a day once a week during the sport season, coaches follow a light script to touch on everything from avoiding language like “You throw like a girl,” or “We raped the other team,” to more challenging areas like bragging about sexual reputation. Follow-up studies indicate a positive impact, most pointedly by a code instilled by the peers themselves. “When they see each other engaging in disrespectful behavior, they’ll say things like, ‘Hey, boys to men,’ as a way of calling each other out. So, I’m hopeful,” says Miller. “But I know we have a huge amount of work to do.”
dr. ALLISON FREEMAN
ALLERGIST AND IMMUNOLOGIST
ALLEGHENY HEALTH NETWORK
Imagine your child has a peanut allergy. The slightest exposure can lead to stomach cramps, a runny nose, skin rashes like hives and swelling or even a life-threatening anaphylactic reaction. When the EpiPen is always kept within reach, the last course of treatment you would probably turn to involves the peanut itself.
It’s called oral immunotherapy, or peanut desensitization treatment, during which a child is gradually exposed to increasing doses of an extremely small amount of peanuts in a controlled environment to build up their tolerance. Pediatric Allergist Dr. Allison Freeman is one of only approximately 200 allergists around the country who offers the treatment.
During an induction, patients will spend all day in her office, eating miniscule amounts of peanuts until they feel something: A stomach ache, an itchy throat. Indications of their threshold. Parents are then given drops of diluted peanuts to take home, administered daily, returning to the office every two weeks to increase the ingested amount to identify the new tolerance threshold. Drops are then switched out for peanut capsules until eventually, pieces of whole peanuts are introduced. Extremely small doses — a quarter of a peanut, half a peanut, one whole peanut — measured on a jewelry scale to ensure an exact match to the test peanuts, taken daily. Every two weeks, the size of the peanut is increased until a maintenance dose can be consumed without reaction. Patients typically “graduate” after eight months, although they must continue eating the same amounts of peanuts daily for five to ten years or longer.
One of her patients, 5-year-old Aubriana Kane, developed a reaction when she was 18 months old after consuming cake with peanut butter. “We were pretty shocked when she came up positive,” says her mom, Emily. As a result, navigating the grocery store shelves became a tricky endeavor. “There’s so much you don’t think about,” she adds. “You don’t think about things being manufactured in a nut facility … We were lucky. In Connecticut, she was in a preschool that was nut-free. She’s in a nut-free preschool here, too. But still, not all the parents look at the ‘manufactured in’ part. They think, ‘Oh, well, this doesn’t have nuts, it’s gummy worms.’”
There are approximately 1,000 kids like Aubriana in the Pittsburgh area who suffer from severe peanut allergies, which has resulted in a five- to six-month waitlist to get into Freeman’s program. The increase in dangerous food allergies is a phenomenon she hopes begins to reverse itself with changes to newborn feeding recommendations, which encourage egg and peanut introduction before 6 months of age, and with desensitization therapy. While it has become such a common conversation among parents that it rarely raises an eyebrow, peanut allergies were about half as likely 20 years ago.
Freeman suggested several reasons are being considered for the increase in food allergies. “Our foods are heavily processed; we’re not getting enough fresh fruits and vegetables or outdoor sunlight for our Vitamin D; we get antibiotics often, which disrupts the balance of the digestive tract; and our babies went through a phase where we overly protected them by trying to keep them away from these foods thinking it would help,” she says. “We’re trying to encourage parents to let the baby’s pacifier get dirty once in awhile. Some of the choices we’ve made as a society for food and infant care and so on have worked against us. And the more we all get our intestines back into a natural state, the better.”
dr. GEORGE MAZARIEGOS
director of the hillman center
for pediatric transplantation
There’s a glimmer of hope for the more than 500 children nationwide whose names are on the liver transplant waiting list thanks to an unconventional approach that provides a solution that is life changing — but more importantly, lifesaving.
So-called living donors are healthy adults, ideally between the ages of 18 and 50, who opt to undergo surgery to remove about a quarter of their organ that is then transplanted into a recipient. Such a small portion helps to reduce a donor’s risk of complications and allows them to heal faster.
“It’s really a fascinating organ,” says Dr. George Mazariegos. Unlike other organs, the liver can regenerate itself within a few weeks. Cooler even than that, he adds, is that the donated portion of the liver will grow to the size it’s supposed to be. “It will grow and it will know when to stop growing based on hormonal signals, we believe. But we don’t completely understand that.”
Although there is a low mortality rate for children on the liver transplant list, not all children get an organ in time and waiting can cause developmental delays in children. That wait can be exacerbated for children since the liver has to be matched in size as well. Living donors have ensured that fewer children die while on the waitlist, but ideally, Mazariegos wants that mortality rate to go down to zero.
Children’s Hospital of Pittsburgh of UPMC performs more living-donor liver transplants than any other pediatric transplant center in the country, having done more than 135 procedures since the program’s inception in 1981. The Scientific Registry of Transplant Recipients has ranked Children’s as the best out of 62 of the country’s pediatric liver transplant centers in terms of one-year overall survival for both the patient and the liver graft.
“What we really want is that every child gets the liver that they need at the right time,” says Mazariegos. “Living donation can be a lifesaving therapy for many children, so we want to extend that to as many kids as can benefit from it.”
And while most living donors are family members, increasingly the hospital will get a phone call: I’d like to donate my kidney or liver. How do I do that?
“We don’t want any child to die who needs a liver,” Mazariegos says. “All it takes is one donor to save one life.”
dr. mark sangimino
PEDIATRIC ORTHOPEDIC SURGEON,
ALLEGHENY HEALTH NETWORK
The framed pictures are some of the first things you see when you walk through the halls of Allegheny Health Network’s Pediatric Orthopedic Institute in Wexford. Drawings of colorful rainbows and smiling, yellow suns tucked among pages neatly torn out of a coloring book that contain images of penguins, leprechauns hiding behind a four leaf clover and little girls on ice skates with handwritten messages in crayon and marker scrawled across them from Payton and Kylie, Adam and Luke.
Thank you for helping the people in need and helping me. We all love you — Paige.
“Our heart is in it and I know I’m accused of having a lot of passion for it, but I feel like it came out of my training,” says pediatric orthopedic surgeon Dr. Mark Sangimino. That training began with a family who cared — mentors who cared — and is now fostered by the parents who bring their kids: infants, children and teens with debilitating orthopedic injuries and congenital orthopedic conditions. Soft tissue tumors, cerebral palsy, clubfeet, hip dysplasia, muscular dystrophy, skeletal dysplasia, spina bifida and scoliosis. “I see agapeic mothers who just do things for their children that are almost impossible. Their child requires their whole attention, their whole life, and they’re just so energetic. We feed off of their love for the child,” he says.
At the core is a fundamental desire to treat such conditions holistically with non-surgical and minimally invasive surgical options whenever possible. Options like the EOS system, 3-D imaging technology that appeals to kids with its spaceship vibe while parents can breathe easy knowing that in 3 seconds — click, click, click — the radiation dose is 40 times less than that of a traditional X-ray machine. It also allows for more accurate diagnostics and treatment planning.
When the stand-alone facility opened in 2016, it represented a 10-year labor of love driven by a tirelessly passionate team that watched, and waited, brick by brick. Beginning with the very first patient, teams of physicians, nurses, specialists and therapists would take a multidisciplinary approach to treatment that involved the whole family, not just the patient.
“It’s a lot of psychology,” Sangimino says. Families want to gain a keen understanding of what their child is going through, requiring doctors to have the time and patience to walk them through it. There are tears and frustration, but still choices. That team is there to help you figure out everything from how to work out insurance problems to the roles everyone will play during treatment. “It’s a team, multidisciplinary, holistic approach that I happen to be obsessed with because I don’t see any way as a surgeon to move forward unless I see that green light of understanding,” he says. “I can’t in my soul. It may be a personality defect, but I have to see that green light — we understand, we see, we want — because no matter what we do the parents end up with that child at home. So, I think it’s worth its weight in gold to be putting the right people in that room.”
When he sees parents go from despair to green light, that’s when he realizes that such understanding is more important than what he does surgically. Together, physician and family members shoot for one-year plans. Present options. Ask questions to gain insight into what a parent’s best hope is and what their worst fears are. “I won’t make a surgical decision until I understand those,” Sangimino says. “We make an action plan together. And then we move forward.”